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Will new maternal health legislation reduce deaths — or just delay action?

Last month, Congress passed “landmark legislation” that will provide states millions of dollars to figure out why women are dying from pregnancy and childbirth-related causes, with the aim of preventing those deaths.

The legislation raises some crucial questions: Do we still not know why mothers are dying? Will more committees and recommendations really help? Perhaps. Despite the big reductions in deaths achieved in states such as California, experts say the law will help by prioritizing maternal deaths and providing local explanations to a broader crisis.

The risk of pregnancy-related deaths among black women is three to four times higher than among white women, a fact both Serena Williams and Beyoncé brought to public attention following their own harrowing childbirth experiences, including Williams’ description of how her medical team did not listen to her when she self-identified potentially fatal blood clots in her own lungs the day after giving birth by emergency cesarean section.

Most of pregnancy-related deaths are preventable, according to a report published from nine different states’ Maternal Mortality Review Committees along with the CDC.

Enter the new law.

The law sets aside $12 million per year for five years for states to form committees to review pregnancy-related and pregnancy-associated deaths, and then develop and implement recommendations to improve the quality of maternal care. The CDC will help oversee the effort and collect data from the states.

“The great value of having all the states doing maternal mortality reviews, will be this cataloguing of what’s going on with women’s health in the United States in a way we haven’t had before,” said Eugene Declercq, professor of community health sciences at the Boston University School of Public Health who sits on the Massachusetts committee.

While part of the law’s aim is to figure out why women are dying, California, which has had a committee since 2006, already knows. The state has taken action to reduce its rate of death and complications —the maternal death rate in California fell 55 percent from 2006 to 2013 — and has widely shared how other states could do the same.

“We’re unlikely to have major new understandings, but I think there are some important locality issues,” said Dr. Elliott Main, CMQCC’s medical director and the chair of the California Pregnancy-Associated Mortality Review Committee.

“The causes of maternal mortality do vary state to state, so it’s important to be able to localize what’s going on,” he said. “Starting a committee makes it a priority to do something. These cases, if you can turn them into powerful stories, it really helps with the change. Folks in Oklahoma or Texas don’t want to be driven by what happens in New York or California.”

Boston University’s Declrecq said the state review committees will first look at deaths of all women of reproductive age — without identifying individual patients, clinicians or hospitals — and determine which deaths were pregnancy-related. From there, they’ll try to determine if any given death was preventable, with the aim of making recommendations to the state from their findings.

He said that only about one-third of maternal deaths occur during labor and delivery or in the following week. About one-third occur during pregnancy and another third between about a week and one year after birth. The risks aren’t just about emergencies during labor.

“What we’re talking about is public health issues,” he said. “And that’s where you get into trickier issues around … whether it was preventable, for instance. We honestly end up with discussions like, ‘Well, if we had a really functional social system that identified these problems early on and got the woman care years before she got pregnant, then this life might have been changed.’”

Declrecq said the best outcome for this legislation may be much broader than maternal deaths, which make up about 1 percent of all deaths each year among women of reproductive ages. These deaths are on the rise in the U.S.

“If it’s the beginning of a systematic approach to dealing with women’s health, not just maternal deaths, but women’s health, then it can be a very promising base on which to build.”

A new California survey of pregnant and new mothers paints a bleak picture of what it’s like to be a black mother.

In Listening to Mothers in California, black mothers reported not being heard by their health providers and said they experienced discrimination during childbirth. They also experienced higher rates of anxiety and depression during and after pregnancy than white women.

The findings add fuel to a growing sense of urgency on maternal health. On Wednesday, California Gov. Brown signed into law two pieces of legislation that will help pregnant and new mothers get help for maternal mood disorders.

“It’s so disheartening that we did find over and over so many areas where black women were suffering the most,” said Carol Sakala, lead investigator on the report and director of Childbirth Connection programs at the National Partnership for Women & Families.

While 82 percent of black women surveyed agreed that “childbirth should not be interfered with unless medically necessary,” the report showed that 42 percent of black women gave birth by cesarean section, compared to 29 percent of white women.

Black women were also more likely to have repeat C-sections: only 8 percent of black women had vaginal births after cesareans, compared to 16 percent of white women.

But black women did have a “deep interest in something else,” said Sakala. “When we asked about future interest in having midwifery care, in having a doula, having a birth center birth or a home birth, they most strongly expressed an interest in those more user-friendly forms of care.”

Telling us what we already know?

While the survey deliberately oversampled black mothers in order to better grasp the issues they face, one expert said it didn’t go far enough.

“It’s helpful, but for me, it’s not novel,” said Monica McLemore, a nursing professor at the University of California, San Francisco who was not involved with the survey. “We know that there are health-related disparities in terms of pregnancy and birthing. We already knew that.”

McLemore said truly listening to mothers would go beyond “representing them numerically” through surveys.

“That’s going to require some other emancipatory or participatory method to be able to ensure that they are included at all levels of the project, including its design, its implementation, its analysis,” she said. “Because otherwise, we’ll keep generating reports that are describing disparities of information that we already know.”

McLemore also pointed to the fact that the main survey team was made up solely of white people. She said she would have asked different questions.

The survey “doesn’t answer the question ‘Has your mistreatment during your birth, all the disrespect and everything that you have had to deal with, is that influencing your future health care seeking behaviors?’” she said. “‘Is that influencing whether or not you will expand your family?’”

McLemore said the survey also doesn’t shed light on the question of whether black women are less likely to enter the health care workforce because of negative experiences with maternity care.

The survey did find that black mothers had more postpartum visits than their non-black peers, which Sakala said may mean that they had more postpartum challenges for which they sought help.

Q&A: Dr. Emily Dossett on the disturbing lack of mental health care for moms in the safety net

Dr. Emily Dossett met a patient once who had schizophrenia, but went off her medication when she got pregnant. The pregnant patient then ended up in the hospital several times for psychotic episodes, and eventually landed in jail for assaulting a fellow patient. Dossett, a psychiatrist who works with women struggling with mental and emotional issues connected to pregnancy and postpartum, met her once she was in jail. The woman gave birth while incarcerated, and the Department of Child and Family Services took the baby because there was no family member to take custody. Dossett thinks the woman’s situation could have been a lot less traumatic had she gotten specialist psychiatric care a lot sooner. She says this woman’s story is all too common.

Dossett, an assistant professor in both the Psychiatry and Behavioral Sciences and OB-GYN departments at USC’s Keck School of Medicine, believes that connecting doctors — general physicians, OB-GYNs, pediatricians and general psychiatrists — to specialists who can treat pregnant women for behavioral health issues could help women who would otherwise fall through the cracks. She is spearheading a pilot program in Los Angeles County to do just that.

Email-based programs have already proven successful for getting other safety net patients specialty advice, treatment and referrals. In 2012, the Los Angeles County Department of Health Services (DHS) implemented the souped-up email system eConsult to connect primary care providers with specialists. Dossett is adding maternal mental health to the existing mix of specialties.

In California, low-income mothers are much more likely to experience prenatal depression than women with private insurance. Untreated behavioral issues can be damaging to both the mother and the child’s long-term physical and mental health.

Together with collaborator Christopher Benitez, a psychiatrist with the Department of Health Services, Dossett launched the pilot for Los Angeles County’s Department of Mental Health Services this past summer. I recently sat down with Dossett to learn more about how her project might help get women the behavioral health care they need.

The following interview has been edited for length and clarity.

Q: What problem are you trying to solve?

A: The missing piece for a lot of people in this field is what’s called “reproductive psychiatry” — psychiatrists who are trained to feel comfortable working with pregnant and postpartum women.

You can get all the way through medical school and four years of a psychiatric residency at most places and, unless you seek it out, you’re not going to get a single lecture on perinatal mental health. When you look at the statistics, the highest number of psychiatry patients are women of childbearing age. And we’re prescribing medications that are sometimes teratogenic, meaning they may cause some problem with the fetus’s development. It is crazy. I don’t know if it’s years of sexism or not understanding that this is a real issue. I know for some psychiatrists, it could be a liability; they’ll just take the women off their meds. Or they’ll just basically say, “Come back when the baby’s born.”

And a lot of it is women themselves who go off their meds. So it’s not like women are dying to stay on their meds, and doctors are thwarting them. A lot of women just go off because they hear that they’re bad for the baby.

I was really frustrated of seeing women get pregnant and then not have adequate care. I felt like my clinic was putting women back together who had dropped out of the system because they got pregnant.

Q: What are some of the issues for the fetus or child if the mother suffers from a perinatal mood disorder?

A: What we know from the literature is that relapse is very real and untreated anxiety and depression is really bad for the mother and the fetus. It actually has repercussions for the life of the child.

These are hard to separate out: being exposed to depression and anxiety in the womb, and then the issues around being raised by a parent who is struggling with anxiety and depression. So it’s a little bit nature and nurture, and it’s kind of a mashup.

There’s this idea of epigenetics. You have your genome that you get in your DNA and how that’s actually expressed is heavily influenced by what’s called the “intrauterine milieu” — what's going on in the womb.

And so if the mother, say, is struggling with untreated anxiety or depression, her own stress management and stress hormones are off kilter. Cortisol is one that has been studied a lot. Of course, Serotonin and norepinephrine and other neurotransmitters are also at play.

Those are real chemicals that really float around in your body. And they really can cross the placenta and affect the developing child. And what happens is that the child’s own stress management system can be expressed in such a way that’s it’s just always off kilter for the life of the offspring. So those kids are more likely to be anxious, they’re less resilient to stress and trauma, they’re more likely to have ongoing mental health issues themselves. Having said that, it’s certainly not a one-to-one correlation. There are a lot of other things that play into it.

So that’s actually why we think that untreated anxiety and depression leads to preterm delivery as well because cortisol is also the hormone that kicks off labor, so if it’s dysregulated, then it can lead to this signalling that it’s time to give birth a little too early.

And then there are studies that have followed children out to age 18 that look at antenatal depression [occurring before birth]. I think those are really hard to do. Because if the mothers — we always talk about mothers, fathers of course are involved, but mothers tend to be the primary caregivers — if the mother lacks affect, if the mother isn’t responsive to the emotional needs, if the mother is neglectful, if the mother’s not motivated to sign the child up for Head Start because she’s depressed, then that’s going to, of course, affect the child.

Q: How does eConsult work, and how does your pilot factor into the bigger system?

A: Basically, it’s a fancy, HIPAA-compliant, email exchange.

When the practitioner logs on, they have to put in some patient information and ask their question, then submit it. And then I get an email in my inbox because I’m what’s called the “specialty reviewer.” I read it and I can either answer it, or if I have questions, I go back. I can also refer them to a specialist.

Q: So, they can’t really tap your expertise until the next appointment?

A: So, what advocates have wanted is a perinatal psychiatry phone line where the doctor can call someone who is trained, who can advise from the other end of the line. Massachusetts has a program like that called MCPAP for Moms [Massachusetts Child Psychiatry Access Program for Moms].

Of course that would be ideal. But if we can’t have the gold standard, let’s use what we have and try to at least see if using it works. If it does, great. If it doesn’t, then that actually adds fuel to the argument that we do need some kind of phone line.

You have the biological issues and the emotional and the psychological issues and then on top of that you have these systems issues, where in general — in both the public and private sectors — women with serious mental illness get bounced around like a hot potato between mental health care providers and prenatal care providers.

The women in the safety net systems are usually so ill that the self-advocacy piece becomes almost impossible. So, we’re trying to bridge that gap to try to capture these women where they are.

We don’t know if it will work. But, we hope it will.

Q: So right now, as a pregnant person, how would I find a reproductive psychiatrist?

For more than three hours, the panelists delved into the scientific, legal, and ethical considerations surrounding the current guidelines for growing human embryos. They also discussed synthetic embryos — embryo-like entities that scientists are starting to grow with stem cells rather than using a sperm and an egg from human bodies.

It was a wide-ranging discussion notable both for its importance and for its surprisingly one-sided perspective: The panelists numbered nine, and all of them were men.

“My assumption was probably I wasn’t speaking on [the panels] because it would be limited to scientists who were actually engaged in that kind of research,” Roosth later told me. “I didn’t realize that they were actually going to be bringing in bioethicists and other social scientists who would be speaking to the same issues that I’m trained to talk about.”

She continued to try to rationalize the exclusion. Perhaps she wasn’t invited to join the panel because she did not have tenure, or because her book, “Synthetic: How Life Got Made,” hadn’t yet been published? Or maybe, she thought, it was because she is not really a legal expert.

LOW VACCINATION RATES AT BAY AREA SCHOOLS RAISE ALARM

With alarm over the Disneyland measles outbreak growing across California, almost 5,000 kindergartners enrolled in Bay Area schools are without proof they've been fully vaccinated, a major concern as the highly infectious disease continues to spread.

"They're not immunized, they're not protected," said Amy Pine, director of the Immunization Program for the Alameda County Public Health Department.

But the reasons why so many kindergartners — one of 13 in the Bay Area — don't have up-to-date vaccinations is as diverse as the students themselves: While many lower-income parents struggle to get their kids to the doctor or deliver the paperwork, some higher-income parents are refusing to get their children immunized over concerns the shots lead to autism and other illnesses.

MAJORITY AT SOME LA KINDERGARTENS ARE UNDER-VACCINATED

Over 90 percent of kindergarteners at some Los Angeles Unified School District (LAUSD) schools are walking the halls without all of their state-required vaccinations. At some Oakland schools, the numbers top 80 percent.

These “conditional entrants” must have received at least one dose of each of the required vaccines to enter school, with the promise to get fully up to date in due time.

But neither the state nor school districts has a formal tracking system to ensure that these children become fully vaccinated.

what mental illness looks like

They sat for photographs and told me their stories. One lost a father when she was seven-years-old to a bullet from a bar’s bouncer. Another served five years in prison. Another met his girlfriend through his treatment and therapy.

Each person had been diagnosed with a mental illness, ranging from mild depression to schizophrenia. And they each found community and help within the walls of the Stanislaus chapter of the National Alliance on Mental Illness (NAMI).

A WEDDING CRASHER NAMED IRENE

The lights flickered. The music stopped. The dancers stood still. We could hear the horizontal rain drumming the tent flaps.For months before, from our Los Angeles apartment, Jake de Grazia and I had envisioned our three-day homegrown wedding on Jake’s family farm in Chadds Ford, Pa., about 25 miles west of Philadelphia.